Long COVID patient feels 'discarded' by N.L. government, says it's deflecting responsibility for condition

Newfoundland and Labrador's Chief Medical Officer of Health, Dr. Janice Fitzgerald, says addressing and treating long COVID isn't within the purview of public health.

It's left some patients in the province feeling left behind.

"There's so many people that are likely suffering that have no clue because there is no provincial directive," said Stacey Alexander, a teacher from Corner Brook who has been suffering from long COVID since early 2020.

"I feel discarded."

Long COVID researchers say the condition, in which a cluster of symptoms persist long after an initial infection of COVID-19, has affected nearly 15 per cent of Canadian adults with a suspected or confirmed COVID-19 infection. An estimated 2.4 million Canadians have developed long COVID since the beginning of December 2021.

Some long COVID experts say it's the "post-pandemic pandemic," with Canada's chief science adviser warning that it could be a "mass disabling event."

In an interview with CBC News, Fitzgerald said the public health department is not tracking cases of long COVID, nor is it providing information or advice about how to treat it to health-care professionals or the public. 

"It's public health in the sense that the public's health is affected, but it's not public health in terms of what public health does," said Fitzgerald.

Long COVID patients feel abandoned by N.L. public health department

1 year ago

Duration 2:15

Over a year ago, Newfoundland and Labrador’s chief medical officer of health said the province would have to develop a way forward to deal with long COVID. However, it does not track cases, nor provide information and advice to doctors and the public. That has some people diagnosed with long COVID, like Stacey Alexander, feeling in the dark about where to turn.

CBC News has made numerous requests to the health authority for information about what, if any, treatment plans exist for long COVID patients.

In a statement, N.L. Health Services said it's working on joining a national clinical trial related to long COVID in "the near future."

"By inviting patients to participate in this trial, N.L. Health Services is hoping to track long COVID and get a better estimate of the scope of its prevalence," reads the statement.

"Depending on the uptake and numbers of participants in the trial, N.L. Health Services may consider additional options for patient care such as a long COVID clinic."

Acute care

At a news conference in the spring of 2022, Fitzgerald said the province "will have to develop a way forward" and start looking at how to deal with long COVID.

Over a year later, Fitzgerald said tracking and treating long COVID is within the realm of acute care, and not within public health's jurisdiction "at this stage."

Dr. Angela Cheung — a physician and co-lead of the Long COVID Web, a national long COVID research network —says acute care typically refers to treating someone who is "acutely ill" — for instance, treating someone who is losing oxygen due to a COVID-19 infection and who needs to be taken to hospital.

It's not always the same as treating someone with long COVID, she said, formally known as post-COVID condition.

"Usually we think of post-COVID condition as something that is lingering after the acute episode," said Cheung. "More of a chronic illness than an acute illness per se."

Infectious diseases researcher Tara Moriarty says an estimated 42,000 people in Newfoundland and Labrador have had COVID-19 symptoms lasting at least three months since December 2021 that are severe enough to limit daily activities.

She said the condition is associated with a "significant and persistent increase" in the use of health-care resources, including hospitals. Because there currently aren't any long COVID clinics in the province, she said, many patients are likely being treated by family doctors or by "non-acute care teams," unless they require hospitalization.

Alexander said she's experienced a variety of long COVID symptoms over the past few years, from brain fog and muscle tremors to nervous system dysfunction. 

Fortunately, she said, a lot of her long COVID symptoms have begun to improve over the past six months. But her immune response still isn't the same as it was prior to 2020.

"In terms of a government response, it's leaving a lot of people in the lurch," she said.

"Part of public health is education. And if the education, if the information is not coming from public health, who's it coming from?"

Finding information

Fitzgerald said the advice that's being given to people about long COVID is from "people who are treating patients with long COVID and who have followed up on those patients with long COVID."

"Public health hasn't really been the ones giving the advice with regard to how to treat people with long COVID," she said.

Cheung said responses to long COVID vary by province — while places like Quebec have invested $20 million over three years and established 11 long COVID clinics across the province, she said, there is no published provincial response in other provinces or any of the three territories.

Cheung said public health departments may be able to play a role in addressing long COVID by advocating for and promoting COVID-19 prevention measures, for instance.

Research hubs like the Long COVID Web are also working to ensure there's more consistency across the country in terms of information and resources, said Cheung.

Cheung also said her research teams are looking to partner with a physician in Atlantic Canada. She suggested patients and health-care professionals who want to learn more about the condition visit the Long COVID Web website or partake in one of their webinars. 

Moriarty said it's advisable for provinces to begin surveying people with persisting COVID-19 symptoms and to ask patients whether and where they have needed to receive additional health care. 

"Survey-based approaches like this might be useful for getting a rough idea of what's going on right now and what the effects on the health-care system may be in Newfoundland and Labrador."

Alexander has participated in long COVID symposiums and has done hours of her own research about the condition. She wants information to be made more easily accessible by either the province's Health Department or health authority so others who have lingering COVID-19 symptoms don't have to suffer in the dark.

"It is something that lasts with a large proportion of people, and not acknowledging it is not only discarding the people that are going through those hurdles but it is also creating a problem."

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